You coloured headaches. But it is not a requirement for the Canadian Case Definition.

Often there are significant headaches of new type, pattern or severity.

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Not sure if you noticed this - in any one category, the person doesn't have to have all the symptoms.

Gerwyn said:

Are you really trying to tell me that there is any difference between sleep dysfunction and unrefreshing sleep!Last time I checked the former caused the latter!

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Well, the criteria give various ways to satisfy criterion #3:

Sleep Dysfunction:* There is unrefreshed sleep or sleep quantity or rhythm disturbances such as reversed or chaotic diurnal sleep rhythms.

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Gerwyn said:

Jason is using his subjective interpretation of that just as well he does not do any diagnosing!

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Gerwyn said:

Jason is not a clinician so I,m wondering why you are assuming he got a diagnosis correct?

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Well, whether you not rate him, other people may be interested in the fact that in a published study he reported that 3/23 of those who satisfied the Canadian criteria did not satisfy the Fukuda criteria.
There is a term for this, criterion variance (?), where different people can interpret criteria in different ways.

I'm not so interested in the issue of how many might have the Canadian criteria who don't satisfy the Fukuda criteria. (I'm more interested in the claim that most people who satisfy the Fukuda criteria don't have PEM - the vast majority of research in the field has been published using the Fukuda criteria at least since it was published).

GERWYN: You seem as unclear regarding Dr. Jason's qualifications and research as you are Dr. Wessely's. I agree with Tom K, who has been analyzing ME/CFS research for years, you are getting rather far afield with your statements. The forums are a great place for contributing one's two cents, but you seem to be beating a dead horse here.

Well, whether you not rate him, other people may be interested in the fact that in a published study he reported that 3/23 of those who satisfied the Canadian criteria did not satisfy the Fukuda criteria.
There is a term for this, criterion variance (?), where different people can interpret criteria in different ways.

I'm not so interested in the issue of how many might have the Canadian criteria who don't satisfy the Fukuda criteria. (I'm more interested in the claim that most people who satisfy the Fukuda criteria don't have PEM - the vast majority of research in the field has been published using the Fukuda criteria at least since it was published).[/QUOTE]

GERWYN: You seem as unclear regarding Dr. Jason's qualifications and research as you are Dr. Wessely's. I agree with Tom K, who has been analyzing ME/CFS research for years, you are getting rather far afield with your statements. The forums are a great place for contributing one's two cents, but you seem to be beating a dead horse here.

Well, whether you not rate him, other people may be interested in the fact that in a published study he reported that 3/23 of those who satisfied the Canadian criteria did not satisfy the Fukuda criteria.
There is a term for this, criterion variance (?), where different people can interpret criteria in different ways.

I'm not so interested in the issue of how many might have the Canadian criteria who don't satisfy the Fukuda criteria. (I'm more interested in the claim that most people who satisfy the Fukuda criteria don't have PEM - the vast majority of research in the field has been published using the Fukuda criteria at least since it was published).

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[/QUOTE]

3 out of 23 does not mean anything.If 3out 23 did not have the mandatory criteria associated with a diagnosis of ME,cfs then they did not have ME,cfs in the first place.

I think that Jason does some good work.

Retrospective subjective diagnoses accompanied by meaningless percentage figures is unfortunately is not an example of such.

If 67% of the people given a diagnosis did not "endorse" PEM then there are a number of potential reasons for that.

I know exactly what Dr Wesselly,s CV states you are unclear about the meaning of such qualifications.I also Know what Jasons qualifications are that is why I know that he is not qualified to make a diagnosis anymore than any other psychologist is.That includes me.

They might well have not understood the term in the first place,they may have been exhibiting demand characteristics or most likely they had been misdiagnosed in the first place.Jason should have raised those issues in the paper rather than quote meaningless figures.

The prevalence of PEM in a population with fatigue is many orders of magnitude smaller than the prevalence of the other symptoms.

This means that people presenting and given a diagnosis of Fukuda with PEM is much less likely than those ascribed a definition under the other possible symptom combinations.

That does not mean that the diagnosis is in anyway accurate merely that it is given.

According to Jason himself the Majority of patients given a diagnosis under FuKUDA don,t in any objective sense have ME/cfs at all.Adding subjectivity to the diagnostic criteria of the CCC merely compound the felony.

you cant make a diagnoses in different ways.if you do you end up with different cohorts which are totally useless for research purposes.The terms we are discussing are objectively defined.The canadian criteria are diagnostic criteria.Jason is not a qualified diagnostician

outline goes here
The Lancet, Volume 367, Issue 9524, Pages 1742 - 1746, 27 May 2006
<Previous Article|Next Article>
doi:10.1016/S0140-6736(06)68661-3Cite or Link Using DOI
Is there an Iraq war syndrome? Comparison of the health of UK service personnel after the Gulf and Iraq wars
Original Text
Oded Horn MSc a, Lisa Hull MSc a, Margaret Jones BA a, Dominic Murphy MA a, Tess Browne BSc a, Nicola T Fear DPhil a, Prof Matthew Hotopf PhD a, Prof Roberto J Rona FFPH a, Dr, Prof Simon Wessely FMedSci a Corresponding AuthorEmail Address
Summary
Background
UK armed forces personnel who took part in the 1991 Gulf war experienced an increase in symptomatic ill health, colloquially known as Gulf war syndrome. Speculation about an Iraq war syndrome has already started.
Methods
We compared the health of male regular UK armed forces personnel deployed to Iraq during the 2003 war (n=3642) with that of their colleagues who were not deployed (n=4295), and compared these findings with those from our previous survey after the 1991 war. Data were obtained by questionnaire.
Findings
Graphs comparing frequencies of 50 non-specific symptoms in the past month in deployed and non-deployed groups did not show an increase in prevalence of symptoms equivalent to that observed after the Gulf war. For the Iraq war survey, odds ratios (ORs) for self-reported symptoms ranged from 08 to 13. Five symptoms were significantly increased, and two decreased, in deployed individuals, whereas prevalence greatly increased for all symptoms in the Gulf war study (ORs 19—39). Fatigue was not increased after the 2003 Iraq war (OR 108; 95% CI 098—119) but was greatly increased after the 1991 Gulf war (339; 300—383). Personnel deployed to the Gulf war were more likely (200, 170—235) than those not deployed to report their health as fair or poor; no such effect was found for the Iraq war (094, 082—109).
Interpretation
Increases in common symptoms in the 2003 Iraq war group were slight, and no pattern suggestive of a new syndrome was present. We consider several explanations for these differences.

!00% variation in confidence intervals.Fixed choice questionaire.Drugs given in gulf war not given in Iraq War totally missed the connection which would have accounted for increased prevelance of all symptoms in gulf war by accident or design.Just for good measure confused correlation and causation. If there is something which is the opposite of an epidemiological study this is it.

It should have been presented as "there was a global significant increase in symptoms in the Gulf warsoldiers which was not apparent in the soldiers in the Iraq war.What are the reasons for this?Aha the drugs given in the Gulf war which were not given in the Iraq war.Our simon is very gifted but an epidemiologist he is not.It is not the number of studies that he publishes but their quality.The members of the Wesselly school are notorious for peer reviewing each others papers.The message is dont take things at face value in this game.

Apologies if I was not clear.
I know perfectly well the chances are that it is not a uniform distribution but perhaps I was not clear.
I was just using that as an example - the simplest back of the envelope calculation. I was showing that you would need to assume it wasn't uniform to get what you claimed - trying to prod you to actually back up your claim.

Finally, after I don't know how many opportunities, you actually give your reasoning for your claim.

However, you can't generalise from those figures. Those are for the general population. What the Fukuda definition is looking at is the group that have chronic debilitating fatigue of 6 months duration, etc. So only data from this group is relevant.

Then the symptoms require at least 4 symptoms out of the 8. The people who have one symptom may not have 3 others.

So for example, the two studies I quoted found that
(i) 75% of those who satisfied the Fukuda definition in the Chicago random population study.

(ii) In the Belgium study,
97.3% of those who satisfied the Fukuda criteria had post-exertional malaise.

So anyway, we now know where your claim was from. I thought you might have studies you knew about.

I remain happy that I challenged you asking you for the evidence for the claim. It may be true but it is based on a number of assumptions. The existing data that I can think of does not back up the claim.

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TomK the point is that if they satisfy the HOLMES criteria they also satisfy they aslo satisfy FUKUDA.If they are diagnosed according to Fukuda they dont neccessarily satisfi Holmes.That is why therewas such a controversy whan holmes was changed to Fukuda.

The data you quoted did not say which % satisfied both so once again it is meaningless. In real terms they were all patients satsifying the Holmes critera in which PEM is mandatory for a diagnosis.This is the danger of quoting figures without understanding how those figures are produced.De Meirier diagnoses ME according to CCC .He was one of the clinicians involved in their construction. The patients surveyed had already been given a diagnosis of chronic fatigue syndrome

If you knew perfectly well that the symptoms were not rectangular why did you use that as part of your argumentt I am glad that you are happy.There is no existing data that gainsys my claim.On the basis of normal distribution of the symptoms which can form the diagnosis of Fukuda PEM is by far the least common.The symptom presentation of Fukuda is exactly the same(on minimum inclusion criteria) are exactly the same as clinical deoression.This is many orders of magnitude more common in a population of CFS.This is essentially the nature of Jasons observations.The majority of patients diagnosed by Fukuda actually have fatigue of psychiatric origin.Ergo the majority of patients given a diagnosis of Fukuda do not have PEM.Weboth know that publication of a study in most journals is no measure of quality merely that it contains enough information to be repeatable

am surprised that the letter by Sudlow et al(Sudlow) begins with such loose terminology.Lobardi et al(1) reported a statistically significant correlation beween patients who fulfilled the Canadian Consensus criteria for diagnosing a person as suffering from ME,cfs ,defined as a neurological disorder by the world health authority, and the presence of XMRV.

The CCC diagnostic criteria are the only clinical diagnostic guidelines in the world.All others are research guidelines.The FUKUDA(2) guidelines are internationally agreed and recognised.The research guidelines(The Oxford criteria) used to diagnose people in the European studies(3) are not. The Oxford criteria has fatigue as the only mandatory diagnostic criteria (3).This a strange way of diagnosing a neurological disorder.The CCC guidelines on the other hand have neuroimmunoendocrine symptoms as mandatory.

Sudlow also seems to be unaware of the fact that CFS is not an objective diagnosis. It is a socially constructed label driven by the diagnostic criteria applied by the person making a diagnosis.Different doctors apply different diagnostic criteria and thus produce objectively different patient cohorts which are unfortunately given the same label. I am astonished that someone who purports to be an epidemiologist does not seem to realise this.

Sudlow 's comments regarding the redesigning of the study by Lombardi et al(1) to avoid” selection bias” would lead to unfalsifiable uninterpretible results(1)

.Selection bias is all to obvious in the Imperial college study because all the patients were supplied by one psychiatrist using diagnostic critera constructed by himself and his colleagues which are not internationally recognised.Sudlow is completely silent on this subject.

She seems to be accepting,albeit tacitly, that there is a link between XMRV and prostate cancer while questioning the link between XMRV and ME/cfs which is in statistical many times stronger.There is no clinical data supplied in the European studies for any of the patients control groups or otherwise.

.Sudlow is using the term expectation bias erroneously(4)By not extending the scope of her analysis to the other studies in this area(5,6) Sudlow appears to be displaying cognitive biases of her own.(4)

There were a myriad of confounding variables in the design of the European studies which made the results impossible to interpret(5,6) and the conclusions reached unfalsifyable. Surely an epidemiologist would note that point.

Ludlow's proposed explanation of reverse causality is rather like saying that people with Aids are in such poor health that they are more susceptible to HIV infection.If people with ME,cfs are more susceptible to to a retroviral infection why don’t many more of them also have Aids?

If you knew perfectly well that the symptoms were not rectangular why did you use that as part of your argument.

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This is all in relation to prodding you to justify your claim:

Most FUKUDA presentations do not even include PEM which is not mandatory.

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You made the claim and it took I don't know how many of my posts (and my time/energy) before you finally explained where you were coming from.

Without any evidence, I had no way of judging whether there was any validity to your claim. I had some data which suggested the opposite but I certainly don’t know every study that has been published in the field. But I had reason to believe that you might have presented as fact something which was debatable.

So in the context of prodding you to actually share with us the basis of this claim, I first pointed out that if every person just had 4 of the symptoms and no more, and each symptom was equally likely, then 50% of the patients would have PEM.
That’s an extreme position. I then pointed out that if the same number of patients had 4, 5, 6, 7 or 8 symptoms (a uniform distribution), and each symptom was equally likely, then on average 75% of the patients would have PEM.
I don’t think there is any particular way of knowing a priori the distribution of the number of symptoms in a group that satisfy the Fukuda definition. If one replaces one symptom with a “better” or “worse” symptom, the shape of the distribution will change.
So all this was in the context of trying to get you to explain your reasoning.
And maybe it worked because you finally did.

There is no existing data that gainsys my claim.

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Well I gave you two studies. There may well be other studies out there that give information one way or another.

On the basis of normal distribution of the symptoms which can form the diagnosis of Fukuda PEM is by far the least common.

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Symptoms that are more prevalent in the general population than PEM may be less common than PEM in a group that satisfy the Fukuda criteria.

The symptom presentation of Fukuda is exactly the same(on minimum inclusion criteria) are exactly the same as clinical deoression.This is many orders of magnitude more common in a population of CFS.This is essentially the nature of Jasons observations.The majority of patients diagnosed by Fukuda actually have fatigue of psychiatric origin.Ergo the majority of patients given a diagnosis of Fukuda do not have PEM.

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I don’t think anything you have said in these sentences is proven (and I'm not sure what observations by Leonard Jason you are referring to?). My guess is that you may have mixed up the empiric criteria with the Fukuda criteria.

Cort, your comments seem to indicate that you believe those critical comments published in Science are coming from scientists who sincerely want to find the physical cause of ME/CFS, and to save us from the likes of WPI/Cleveland Clinic/NCI/Peterson/Lombardi/Moskovits; that they have no hidden agenda, contrary to what their history indicates. Is this really what you think is going on?

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You take my comments way of context. If the question was whether the questions were legitimate - many of them were and they were brought up by other researchers as well. I don't want us to miss that fact because of who raised them. They were wondering about them. I was wondering about some of them...researchers all over the world were probably wondering about some of them. Dr. Vernon, Dr. Bateman and Dr. Klimas brought the cohorts up. I was contacted by someone who was worried about the blood handling of the healthy controls.....there were probably always going to be questions.

Of course those guys have an agenda! If it was up to them there would be no more research on XMRV.

What I am concerned about is that other researchers who read the comments may not know the background or take the trouble to find out. I am glad to see that Mikovitz answered and that she answered so well.

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They have some real chutzpah to continue on with their defamation. I guess I shouldn't be surprised by now, but somehow I still am. It really is too bad that Science published these kindergarten comments after making WPI and collaborators jump thru hoops to make this paper unimpeachable.

I guess we all are worried that people who aren't intimately aware of the state of ME science will take these comments at face value. In some ways I guess it is good they did engaged in their usual egregious sloppiness and misinformation as I think the casual reader will pick up on this by reading Dr. Mikovits' response.

Too bad she didn't address stuff like the ludicrous statements that if one is diagnosed with CCC then one automatically does not have CFS as defined by Fukuda. Also no mention was made of the dutch studying idiopathically fatigued patients (ie Oxford "CFS") and passing them off as "CFS" patients. I guess she was sticking to just talking about the Lombardi study.

Dr. Mikovits did a wonderful job and maybe I'm nitpicking, but I would have liked to see a point by point response to every point made by the commentators.

There are so many factual errors in the critics' letters to Science that it is laughable.

Do they just make this stuff up?

Aren't these supposed to be scientists?

When someone proposes criticism without carefully making sure of the widely known facts on the situation, then I can't help to wonder if there is an open mind. An open minded person would have looked at original study carefully, then, if flaws were seen, point them out. But this was point out flaws without having the facts straight, even though they were there in the study. Even I knew from the beginning that it didn't involve people just from Incline Village, and I don't read medical journals.

There are so many factual errors in the critics' letters to Science that it is laughable.

Do they just make this stuff up?

Aren't these supposed to be scientists?

When someone proposes criticism without carefully making sure of the widely known facts on the situation, then I can't help to wonder if there is an open mind. An open minded person would have looked at original study carefully, then, if flaws were seen, point them out. But this was point out flaws without having the facts straight, even though they were there in the study. Even I knew from the beginning that it didn't involve people just from Incline Village, and I don't read medical journals.

That is not true at all:
A maximum of 60.3% of the Fukuda criteria group (97.3% of whom had PEM) satisfied the Holmes criteria (951/1578).

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exactly a patient given a diagnosis under fukuda would not neccessirily qualify for Holmes but a patient given a patient given a diagnosis under Holmes would satisfy always fukuda.

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Well technically that wasn't what we were talking about ... but maybe we don't need to have that conversation again.

The Holmes criteria certainly look more specific.
I am some what rusty on the issues relating to them. Most of the papers that I have read in the field are from the 2000s and the Holmes criteria aren't mentioned much.

I know that one of the main groups driving for them to be changed were ... patients!
They claimed that the CDC had defined CFS out of existence.
They had at least two reasons why they might have been so annoyed:
The prevalence figures the CDC were quoting were ridiculously low (single figures per 100,000). But this was based on a physician referral study which missed lots of people.
Insurance companies were using the Holmes criteria (or maybe people were just afraid they'd use them - it was all a little before my time - I got diagnosed in 1994 and didn't really start following US CFS politics till the 2000s - did follow UK ME/CFS politics almost straight away).

Psychiatrists claimed more symptoms meant more somatisation disorder and the like - I wasn't convinced this was the issue.

I think in 1993/94, it would have been better if two definitions had been done:
- a clinical criteria, which could have been a bit looser than the Holmes criteria
- a research criteria which would have been specific but wouldn't have to be as sensitive.

Well technically that wasn't what we were talking about ... but maybe we don't need to have that conversation again.

The Holmes criteria certainly look more specific.
I am some what rusty on the issues relating to them. Most of the papers that I have read in the field are from the 2000s and the Holmes criteria aren't mentioned much.

I know that one of the main groups driving for them to be changed were ... patients!
They claimed that the CDC had defined CFS out of existence.
They had at least two reasons why they might have been so annoyed:
The prevalence figures the CDC were quoting were ridiculously low (single figures per 100,000). But this was based on a physician referral study which missed lots of people.
Insurance companies were using the Holmes criteria (or maybe people were just afraid they'd use them - it was all a little before my time - I got diagnosed in 1994 and didn't really start following US CFS politics till the 2000s - did follow UK ME/CFS politics almost straight away).

Psychiatrists claimed more symptoms meant more somatisation disorder and the like - I wasn't convinced this was the issue.

I think in 1993/94, it would have been better if two definitions had been done:
- a clinical criteria, which could have been a bit looser than the Holmes criteria
- a research criteria which would have been specific but wouldn't have to be as sensitive.

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Tomk there was a huge patient outcry when the guidelines were changed The CDC pushed for that. The critreia need to be able to diagnose a neuroimmune endocrine disorder and not be based centrally on fatigue which is just one of many symptoms.The Oxford criteria have certainly defined ME out of existence

Tomk there was a huge patient outcry when the guidelines were changed The CDC pushed for that. The critreia need to be able to diagnose a neuroimmune endocrine disorder and not be based centrally on fatigue which is just one of many symptoms.The Oxford criteria have certainly defined ME out of existence

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Did I say the Fukuda criteria were necessarily seen as an improvement?
All I pointed out was that some advocates had complained about the Holmes criteria saying they were too strict.

I think it is useful to reflect on such actions - people have to be careful what they wish for. People wanted and pushed for specialist services in England - look what they got. Similar some people wanted NICE guidelines and people only started to protest after the draft guidelines came out. Similarly now people are pushing for evidence-based guidelines in the US without necessarily assessing whether this could make the situation worse not better.

Did I saw the Fukuda criteria were necessarily seen as an improvement?
All I pointed out was that some advocates had complained about the Holmes criteria saying they were too strict.

I think it is useful to reflect on such actions - people have to be careful what they wish for. People wanted and pushed for specialist services in England - look what they got. Similar some people wanted NICE guidelines and people only started to protest after the draft guidelines came out. Similarly now people are pushing for evidence-based guidelines in the US without necessarily assessing whether this could make the situation worse not better.

Anyway this is maybe going a little off-topic.

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no worries.The FUKUDA criteria were not an improvement because it created the production of a heterogeneous patient group with very little in common apart from perceived fatigue.It was certainly driven by advocates.They were advocates of psychosocial causation trying to muddy the waters as much as possible!

There are still no comments up on the Science website in reply to the three letters - pity. I've lots of ME/CFS work to do and other papers I could reply to so I was hoping some of the people here would write in.

If anyone had comments turned down, I'd be interested in hearing from them e.g. PM if you prefer. Different journals can be more picky than others in what they let through.

Also, I was thinking of pointing out that Peter White's financial interests haven't been mentioned
The letter mentions Michael Sharpe's interests but not Peter White's. He won't like it but I've noticed he often doesn't give this information so I've been looking for an opportunity.
So I'd like to post this:http://www.biomedcentral.com/1471-2377/7/6
"PDW has done voluntary and paid consultancy work for the Departments of Health and Work and Pensions and legal companies and a re-insurance company." (the MRC have strict rules so he had to say it for the PACE Trial)
but if they let a message through on that from somebody, they might not let them post something else. And if they block me on that, they'll probably ignore me after that.
But if anyone else wants to post the PDW info, it would free me up to post something else.

There are still no comments up on the Science website in reply to the three letters - pity. I've lots of ME/CFS work to do and other papers I could reply to so I was hoping some of the people here would write in.

If anyone had comments turned down, I'd be interested in hearing from them e.g. PM if you prefer. Different journals can be more picky than others in what they let through.

Also, I was thinking of pointing out that Peter White's financial interests haven't been mentioned
The letter mentions Michael Sharpe's interests but not Peter White's. He won't like it but I've noticed he often doesn't give this information so I've been looking for an opportunity.
So I'd like to post this:http://www.biomedcentral.com/1471-2377/7/6
"PDW has done voluntary and paid consultancy work for the Departments of Health and Work and Pensions and legal companies and a re-insurance company." (the MRC have strict rules so he had to say it for the PACE Trial)
but if they let a message through on that from somebody, they might not let them post something else. And if they block me on that, they'll probably ignore me after that.
But if anyone else wants to post the PDW info, it would free me up to post something else.

It is well-recognised that authors' interests should be included in publications.

We are only given information on Michael Sharpe's interests with this
letter[1]:
"M.S. has been paid by insurers for independent advice on medical claims that might include CFS. He has also been paid by lawyers for independent advice on litigation that might include CFS."

Peter Denton White's (PDW) interests are:
"PDW has done voluntary and paid consultancy work for the Departments of Health and Work and Pensions and legal companies and a re-insurance company."[2]

Dear Dr. X (lots of journals call you a doctor to be on the safe side)

Thank you for submitting an E-letter to Science commenting on the Technical Comment by Andrew Lloyd, titled "Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome." We have read over your contribution, but will not be able to publish it. We are currently only posting those letters most likely to promote positive and stimulating discussion online. We are letting you know as a courtesy in case you wanted to seek another outlet for your letter.

Please do not reply to this email, as it will not be read by Science. Unfortunately the volume of submissions precludes specific discussions about individual submitted E-letters.